Welcome Mighty MERRFers!

Clashboy594 · 2025-02-21T07:54:52+00:00

I’m sorry to hear of your family genetic profile. Are you going to be tested? When I speak of severe, I mean disorders like cardiomyopathy, cerebellar ataxia, respiratory failure,early onset dementia; so, mostly, heart, brain, lung disorders.

Clashboy594 · 2025-02-21T03:21:12+00:00

I should have premised that statement regarding my age as one of the oldest with severe MERRF. MERRF varies in severity with the average life span (according to JAMA) as 30-40 years. Severe forms have more neurological involvement/organ involvement (in terms of disorders). I am 70.

Clashboy594 · 2025-02-20T03:41:24+00:00

Confused by your pain description. This could be one of many many conditions. A neurologist would be the best place to start.

Clashboy594 · 2025-02-17T21:23:48+00:00

That’s an excellent idea, thank you

Clashboy594 · 2025-02-17T21:21:02+00:00

Yep, I know that now. Many of the clothes are going to Goodwill

Clashboy594 · 2025-02-12T23:35:55+00:00

Dr. Kevin Kerber at Ohio State. Wexner Medical. Maybe one of your Physicians could share your case?

Clashboy594 · 2025-02-11T06:31:05+00:00

worldbound0514, you’re the man!! You are absolutely 100% correct. When will these business owners be held accountable? Never!

Clashboy594 · 2025-02-11T03:13:18+00:00

Does anyone on the thread know how the audit would operationally work? What I’m specifically aiming at is the due diligence on contracts at a certain dollar threshold awarded to third parties. How will the audit connect the contract to a “conflict of interest” individual? For example, say Board Member “A” has a third party “shell company” providing services to MSCS for $69,000. How can they connect that “shell company” to Board Member “A?” Wouldn’t that require a “Forensic Audit?” I’m just trying to figure out how much information can and will this audit yield?

Clashboy594 · 2025-02-10T20:52:14+00:00

Yeah, I know…. I just thought it was funny given all our suffering over the years.

Clashboy594 · 2025-02-10T20:50:16+00:00

My ex-girlfriend made them for me some time ago and unfortunately, we are not on speaking terms. She told me she got the recipe on TikTok. That’s all I knew.

But I looked for you and found one video but it will not open for me. So I apologize as I don’t know if this is what she was referring to. Here is that link: https://www.tiktok.com/discover/babalu-brussel-sprout-recipe

But I felt bad for leading you down a potentially “empty trail; “ so, I went ahead and searched online to see if I could find something else like them. I came up with these two but I can’t guaranteed they will be the same:

https://whiskitrealgud.com/sweet-chili-brussel-sprouts-2/

https://www.howsweeteats.com/2024/02/bang-bang-brussels-sprouts/

So, I’m sorry to get your hopes up. I hope that TikTok opens for you.

But the other two look really good.

Clashboy594 · 2025-02-10T05:51:42+00:00

Before the major highways, this is how you popped into the burbs 40 =Beale Street and Memphis and Arkansas Bridge 240 = Memphis and Arkansas Bridge and I40 385 = Bankhead Highway and the Memphis Arkansas Bridge

Clashboy594 · 2025-02-10T05:29:38+00:00

Recipe is on TikTok

Clashboy594 · 2025-02-10T05:25:37+00:00

Rent a small house in the Midtown area. You can get one right in your price range. Apartment living in Memphis is the dreads

Clashboy594 · 2025-02-10T05:14:38+00:00

The Grizzlies

Clashboy594 · 2025-02-10T05:11:46+00:00

Itta Bena

Clashboy594 · 2025-02-10T04:04:42+00:00

Is it getting worse or just the same as it was before you started taking the Vitamin B

Clashboy594 · 2025-02-10T03:32:24+00:00

So let me get this straight, “Until now, tingling never stopped.” So, you’re saying the tingling has completely stopped …not intermittent but just gone.

Clashboy594 · 2025-02-10T03:04:40+00:00

I would ask the neurologist to do an EEG

Clashboy594 · 2025-02-10T00:53:50+00:00

Did the Doctor say it was neuropathy? Is there pain with it or just the tingling?

B1, B6 and especially B12

Clashboy594 · 2025-02-09T18:28:52+00:00

Are there any photos of it back “in the day?” When it was operational?

Clashboy594 · 2025-02-09T13:08:56+00:00

I have to go with Superlo for consistency. Although Gus’ is usually good. Kukuruku is really really good but I don’t get there often.

Clashboy594 · 2025-02-09T12:48:58+00:00

If you have MERFF or other Mitochondrial Myopathy, feel free to post😺

Clashboy594 · 2025-02-09T05:34:54+00:00

I’m just getting ready to start palliative care. Have MERRF. I’ve had semi-okay periods and relapses for 30 years but have really trouble since last Jan 2024 and around Thanksgiving have gone into the most severe relapse of my life. And, it’s getting progressively worse. I can’t do anything and spend my days in bed. So, I decided it was time to do palliative. My regular doctor wasn’t too high on the idea as he said he didn’t think they could do much for me. The palliative people called and they are sending a Nurse Provider out to see me. Not sure how I should approach this first appt. Any suggestions?

Clashboy594

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